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"It's not a cure, it's a tradeoff"

Wednesday, December 21, 2011

 Throughout this entire process friends have been saying things like "I can't wait until you are cured" or "once this is over you will be better". I just smile and say thanks...but unfortunately many normal people who have not been down this road, which is mostly all of you, thank God, do not understand what is really happening. There is no cure in known medicine for hereditary chronic pancreatitis. Everyday I have been here talking with different parts of the surgical team they have made one thing very clear, you will never be 100% better or cured. You will be trading chronic pancreatitis for a some form a diabetes, which the degree of severity will not be known until it is all said and done. There is no crystal ball to check out how this would work. Even if they get a TON of islets (the full amount in a normal panky is 1 million) they could still die in the liver because I guess our livers are hostile environments. Who knew? Not me, nor did I ever CARE to know:-) Even if you are not diabetic now you could have lost many islets along the way with each bout of pancreatitis.

Sounds so doom gloom, huh? Today I let all this get in the way of my thought process for a bit, but I think I can let that go now and move on. I got a little down on my luck and began thinking about this like: "-Wow, this stinks- I will go through all this pain just to trade one disease for another- Not to mention all the horrible complications they have been telling me about-." OH AND...GET THIS...The day after surgery I will be getting the same amount of pain medication that the whole hospital uses in a day (all the patients combined). Apparently, when this transplant program first began the trauma center got on the doctors case about the amount of meds being given. Now, they understand better and it is cleared up that these patients doing this surgery are doing the most painful surgery known to man! They told me the first two days are the most painful days of your life.  I hope they are also the quickest passing days of my life. The first week is when complications can occur, and they can be serious and require more surgery. Bleeding, bile leaking into the stomach, yada yada, lets not dwell. Of course I hope I don't have to worry about all of this! I guess I will be learning new meditation and breathing strategies, like it or not. Bring on the healing CD's!

After coming to my senses, which I think I have pretty good senses about me, I have decided that they (the doctors here) have to tell you about life after pancreas so that you don't run out the door thinking you are ready to go on the next pub crawl in Old Town Scottsdale with your friends! I get it, I get it, it just stinks listening to all the bad things that can happen after you have gone through a life altering surgery to try and get your quality of life back. So attention friends, even after this surgery I will still be on a long road to recovery. I learned today that I will still have surgical pain for a while, a year while, and I will probably still need my heavy medications for a while too. Thats okay though, because unlike the tunnel I am currently riding in, there is light at the end of the after surgery tunnel.

I have spoke to my family at great length tonight about my chance of becoming a brittle diabetic. I am going to plan on being some form of diabetic, considering 70% are after surgery. Even without the surgery I am at great risk of developing it throughout the progression of my disease. I already showed some abnormalities in my glucose test I had a few weeks ago and it will decline as years go on with CP.  I have decided that  more research dollars will be spent on diabetes since more are affected. Less than one percent of the WHOLE population suffers from what I do. Many more than that are affected with diabetes. My point is I believe more advances will be made in my lifetime with diabetes than with chronic pancreatitis. Also, my biggest factor (besides the fact that what I have now causes chronic pain) is that my genes make my pancreatic cancer risk very high (50% higher). Even though I will be trading one serious medical condition for another serious medical condition, I feel I have no choice. Ready or not, here I come!

UMC Testing is finally here!

Tuesday, December 20, 2011

First day ever at the UMC!
Ready to take life head on! 
Testing is going great so far. I have my list of questions (and so does my mom and so does my dad...) all ready to go for our surgeon meeting tomorrow. My mom and my 91 year old grandma who I adore are here with me in Tucson. My dad is driving in tomorrow for the meeting with surgeons. I thought I would have all this time to meet up with some old friends from high school and some new "pancreas" friends, but its been test after test and then sleep! One of my friends from high school lives here and her hubby actually works as a pharmacist at the UMC so they are going to stop in during surgery recovery and see me.  Oh well, there will be more time for seeing friends later.

My mom and grandma and I are all staying in a nice room at the Windmill Inn here in Tucson. My mom has been AMAZING! Words can't even describe how blessed I have been to have a mother like mine. No hurdle, no test, no scary anything will ever take her down. She always has a smile on her face and always encourages me that every little thing will be okay! She is right so that helps too. Tonight we made our list of questions together and one of mine was mortality. We spoke about it together, and she said to me so positively "You are NOT going to die. You are going to live and live much better then you have been." My mom is so strong. Stronger than me, and she is so positive. She always tells me how much worse this could be, and again she is so right. I have so much to be thankful for and so much to live for. Today, my mom came home from running around town while I was napping after tests and she had sugar free, fat free, ice cream for me! I don't know how she finds these things, but she is always thinking of me. I am just a lucky gal.

I had a test today that required me to eat radioactive eggs. The idea is you eat the eggs and then you go under a camera and it monitors where the eggs are in the digestive system. As you can imagine, radioactive eggs are so gross. Eggs in general make me sick unless they are made into a yummy omelet or something so I got them and my eyes welled up with tears. They were microwaved in a Styrofoam cup and the lady running the test was less than friendly. I cried a bit then I decided that I was being a nut. I ate 5 huge bites, more like swallowed them whole, and I waited to make sure I ate enough for them to work. The best part about all of this is that my mom finds a way to be in the room with me during it all. Even when they tell her no, we both explain how important it is for her to join me in the test rooms! They usually let her and when they don't I typically beg them after I am already in the room and they go get her. It just is better for me when she is there. Call me a baby, I don't care. I like it!  The lady was not so amused, but she ended up warming up to me a bit after the 5 hours we had to spend together. She even ended up giving me a big hug at the end and telling me she hoped everything went well! The test was so long because the food wasn't really going where it should. I will find out about all that tomorrow. I also had about 27 vials of blood taken since I have been here, all in one shot. That had me a bit nervous because I don't like blood work and I don't like 27 vials....ever. You would think about about 1,000 blood draws I would not mind at all, but it just didn't work out like that :-). Tomorrow I have an MRCP, which is just an MRI with contrast. Thursday I have an EGD which is a scope test and I will be sleeping during it, thank goodness. I also have many meetings with docs! Then, I go home and celebrate Christmas! WOO HOO.

"Something Good will Come of this Situation"

Thursday, December 15, 2011

Get well gift:-)
I have a great life! I have learned that through all of this. I don't think I ever thought it wasn't great, as I have generally always been happy and thankful for all that I have. I am even more so now though. Some may look at bad things with a different eye. You can think WHY is this happening or you can think about all the other great things that have already happened. For example, I am in the process of selling a house! What a blessing to have such a flexible job you can do while your sick! I also have a mother who would do anything for me, including drive me around for work and pleasure. Again, what a blessing. I have a wonderful family that can help pay for my hospital bills and my hotel and travel to Tucson. That is a major blessing. I have a whole neighborhood of people in Litchfield Park, where I am from and adore, praying for me. That is the greatest blessing of all. So...I could be mad, and yes I have my days, or I could be glad. Today I am choosing to be glad. Tomorrow all of my girlfriends from high school are getting together to go to dinner with me. They said they wanted to take my mind off of being sick and they want me to just have fun. I have the most wonderful friends. That is yet another blessing in my life. I don't know why this happened or why my genes decided to rear their head and cause a problem after so many years of no problems, but they did. I know that there is a lesson to be learned at the end of all of this. As my mom always says, something good will come from this. Trust me, I am looking for that good and I plan to expand on it when I find it. The first thing is this blog. I am writing it to help so many. It helps me because its therapeutic to write. It also helps me because it allows me to let my friends know what is going on without having to start at the beginning. It also helps friends understand and keep updated. My hope is that it will help some others who have my disease. Maybe they will find my journey helpful when they are on their own journey. Time will tell what the good will be, and I will find it if it doesn't wind up hitting me in the face. Trust me, I will find it:-) I think I have already found part of it!

Total Pancreatectomy with Auto Islet Cell Transplant...

I explained it once before, but now I have a better understanding of what is going to happen.
Here is a LINK to my surgeons web page! Check it out!

http://www.pancreatitiscenter.com/


The doctors will take out my pancreas in a 10-14 hour procedure. You need your pancreas to create enzymes that digest food and make insulin for your body. Without my pancreas the doctors will need to give me enzymes in pill form for the rest of my life. It will be a challenge at first figuring out the right number and combination of pills. Second, I will be diabetic. To avoid the full affects of this they will the the AIT part of the transplant. This means they will TRANSPLANT one part of my body into another. They will dissolve the pancreas completely in a solution (over the course of 5 hours, while I am in surgery) and they will get all of the cells that produce insulin out of the pancreas. They will then put those cells (2 teaspoons full) into an IV bag and inject them into my portal vein, along with a ton of Heparin (an anti-blood clotting medicine) to keep it flowing. Over the next three months those cells will make their new home the liver. They will not work at first and they may never. 33% of lucky people have those cells working and do not need insulin. The rest do, some much more than others. Some are severe and some less. It is in God's hands for me.

Many speak of phantom pain after surgery. That too is in God's hands. Even if I experience this it is still a much needed surgery. I have a very high risk of pancreatic cancer, but with this surgery I will have no pancreas. Also, the cells that will be in my liver will be cleaned of mostly all of my pancreas leaving a small percentage of cancer possibility in the liver. The risk of cancer is much smaller than if those cells were still in the pancreas. Diabetes will be possible and I am expecting it. Other issues with digestion can arise and most experience them. Again, I am ready.

After surgery I will be in the ICU for 3-7 days or longer depending on my case. I am hopeful for a seamless recovery with a short ICU stay. After ICU I will be moved to a transplant floor where I will be in my own room to heal. Immediately after surgery and once I wake, a physical therapist will arrive at my room and try to get me to sit in a chair. I will try every day to move my body in some way and I will try every day to not let pain get the best of me. They say you do better when you are able to move your body. I have thought up milestones that will mean I am doing well, but I know these milestones can change depending on my amount of pain. Doctors say that the pain will not be controlled for 2 days, but that after that it will be well managed. I will have a pain pump and I will be able to press it for IV pain medication every 6 minutes. This surgery is especially painful because there are many nerves associated with the pancreas. Also, they are cutting out a vital organ and putting your internal organs back together again. The surgeons will carefully be placing body parts that have never been linked together next to each other. These internal scars will have to heal and will be painful. The external scar will be from under my breast bone all the way down to my belly button. This will have staples and will take time to heal as you can imagine. I will be on the transplant floor anywhere from 15-30 days and then I will return to a condo that my family will rent in the Tucson area for 7 weeks, or until I am cleared to travel home. The surgeons want me to stay close to the UMC even after I am better, just in case I need anything and also until all of my tubes are out!

I am going to have drains, a feeding tube, and other various "plugs and cords" as I like to call it. I will need to stay in Tucson until they are gone. In the hospital my parents and I will attend diabetes training, feeding tube classes and much much more! We are going to learn how to handle my illness without nurses so I can do it at the condo. It is going to be a lot to learn for all of us but I know once I reach the "learning how to handle my condition at home" phase I will be ready to scream hallelujah from the mountain tops!

My hopes for the first two weeks after surgery:
I pray I wake up and hear "everything went well" or "just like normal".
I pray I wake up and see my Mom, Dad, and Brother.
I pray I wake up and know the world around me and everyone in it and feel like myself.
I hope to be in less pain that I think I will be in the first two days.
I do not mind being over medicated the first few days, I hope I am!
I hope to not remember waking up with any ventilators or any other scary thing.
I want to be walking within the first 2 days.
I want to walk everyday and get strong faster than normal.
I want to spend MAXIMUM 2 weeks at the UMC and then I want to go to the condo.
I will be eating Popsicles sooner than later (I know the feeding tube part will stink and I want it out asap).
I know I will feel better when my swelling goes down and I can wear my own pajamas.
I know I will feel better when I can do my own hair and take pride in what I look like.
I can't wait to feel like showering and having my mom help me with my hair!
I hope I am well enough to enjoy my friends visits.
The day I put on makeup- I am probably feeling much much better and should be home!

Dear Lord,
My hope is that when my pancreas is gone my pain will be too. My threat of cancer will be gone. My life will resume to normal. I will be able to plan things again and actually follow through. I won't be in the hospital every three weeks and I will live life to the fullest. Please Lord help me to achieve these things through you. Please watch over me Lord and let me be healed. Let me make it out of surgery stronger than ever and ready to fight for my life. Thank you for all that you do for me Lord.
Amen.

UMC- University Medical Center

I leave on Sunday for the UMC in Tucson. This is the hospital that the University of Arizona has and it is a level 1 trauma center. It is where Gabrielle Giffords went after her horrific ordeal when she became a shooting victim and it is where they saved her life. These doctors at the UMC are doing unbelievable things with technology and medicine today and are always learning for the future.

My stay with include 4 full days of post-op testing at the UMC. No matter how many pins and needles I have had to endure, it is still not normal for me! I used to be the little kid running around the doctors office screaming about shots or blood work and now it has become second nature, but I still don't like it! So anyways, this week will be a long one, but it's funny because I only thought about that tonight. I have been so busy thinking about the surgery that I have not even had time to think about these tests. Below are the tests (for those of you thinking about TP-AIT or in my situation)

  • MRCP with contrast- Basically an MRI where they will be checking not only the pancreas, but also the liver to make sure the islets can make that their new home. Prayers please for a healthy liver. 
  •  A Gastric Emptying Test- This will involve a radioactive food substance that I will eat and the docs will watch as it does through my body. They will be able to tell what my body does when I eat and how well it gets rid of the food.
  • Labs- Believe it or not, this is the part I am the most freaked about! It is 27 VIALS of blood! Yea, you heard me, 27. Never had that many before, and I hate it as it is, so I will be asking about taking a relaxing medication before hand to get through it:-(
  • Upper Endoscopy- This will be a camera down my throat while I will be sedated. Also worried about this one because normally they put me under general anesthesia for it and this time it is just a sedation...let's hope a heavy one! 
  • Dietitian Meeting- I will be meeting with a dietitian to discuss what to eat up until the surgery and possibly what a diet to manage my diabetes will involve. I now weigh 125 pounds, a first for me, as I am almost 5'10"! But I still look fine, not too skinny, although I would like to gain about 10 pounds since you can lose up to 30 after surgery. YIKES. 
  • Psychological Evaluation- I will have to be mentally evaluated for the surgery. All patients must go through the process. They will be making sure I can handle a surgery of this magnitude. This means they will make sure I have family support, caretakers, mental stability, and understand fully what I am going to be like after surgery and how to care for myself. 
  • Surgeon Meeting- I have already met Dr. Rilo, who will never leave my pancreases side once it is out of my body. He will begin his work on that monster from the time it leaves to the time the islet cells are transplanted back into my liver. I will be meeting Dr. Gruessner, who will be "holding the knife" as my pancreas is removed (unless we do robotics, more on this to come). 
  • GI Meeting- I will be meeting with my GI doctor to discuss my results and talk about what each thing means. 
  • Neurological Evaluation- Oddly enough, I have had migraines from a young age, I mean young, 2nd grade! So they want to study this and make sure they are just headaches and not a form of seizures before they put me through a very long surgery. 


Dr. Rilo is confident that I need this surgery to live. He told me at our last meeting that as long as this study comes back "normal" with no surprises, he will proceed with the transplant. He said he was looking at end of January or beginning of February. He also asked me to begin researching and thinking about robotics. Robotics is a new way of doing surgery, not laproscopic, but it uses a robot to do the actual cutting. Doctors are "manning the machine" from a screen that magnifies everything x 12. It is still  very new and has only been preformed on total pancreatectomy with islet cell transplant a few times! My heart is pounding just writing this! I would be the first ever at the UMC and they would be bringing in a doctor who had experience with the robotics machine and TP. If it did not work after they began, they would change it and go to the normal old-fashioned way. There are positives to doing it this way: less risk of infection, faster healing time, shorter hospital stay, and a much small wound/scar. We will see, I am still thinking about it. I am a prime candidate because I am skinny and small in the stomach area. I will probably be in a medical journal if we chose to go this way!

Back to the E.R.

Thursday, December 8, 2011

Dad and I in the E.R. waiting for my bed.

This is what we do every day around my house...
The pancreas sits about 2 inches from your spine....
Thus, leaving you with a bad backache!
This week was an interesting one to say the least! After I went to tucson to visit Betsy I came home and became really ill. I have no idea why but it just hit me Sunday evening. I was at my condo watching TV when I realized the pain was getting really bad. I called my parents to warn them and told my mom I thought I could sleep through the night. I successfully did that and when I woke I was doubled over in pain. I knew I needed to go to the E.R. This time felt like one of the first attacks I had when I was living in San Diego. I threw on clothes and threw more clothes in a bag for the hospital just in case. When I got there they put me in a wheel chair because I could not walk. I had to wait 2 hours, which is a long time for the Mayo, and was finally taken back. My lipase actually was a little high at 100, normal for me is about 15 (and some of my worst attacks have been at 5,000). They had me wait all day from 11am to 7pm in the E.R. until they got me into a room. Two of my friends, Ali and Kerri came to the hospital to see me that night when I was in my new room. They stayed until my pain medicines were corrected and Kerri even straightened out my nurse by having her call my doctor to make my dose higher since I was in pain. It worked so good job Kerri! 
Baby Cole and I in my hospital bed.
The next morning I awoke and the doctor came in to tell me my labs were worse the second day meaning I would need to stay another night. BLAH. I slept the entire day, I mean I had visitors and I do not even remember them being there!  Jessica and her mom came and I think I cried AND fell asleep while they were there. Sorry about that, girls:-) Good thing I have known Jessi since 4th grade, she won't get rid of me! The last day my best friend Katie and her babies came to see me! What a great day that was for me. I was well enough to enjoy them and we all left the hospital together:-) It was like the kids knew I was sick. They were so sweet and angelic making me even happier! Cole laid with me on my bed and didn't make a peep! He did try to pull out my IV...but good thing his nurse mommy pushed it right back in:-) I was supposed to go on a girls trip to Denver this weekend. I had been praying I would be well enough to go and bam...it hits me and I can't go. I will be so thankful for the day that things like that don't have to happen anymore. I have been bargaining with God lately. I notice myself asking for things and Denver was one of them. I know now that it wasn't meant to be this year and that Denver will always still be there. Let's hope my girlfriends and I can go on a girls trip next winter! Maybe I can even have a glass of wine then. Oh what a glorious day that would be!

My Mom just told me how scared this last attack made her as she said she has never seen me this sick. I think I scared myself too. I kept reminding myself that this would pass and I always get better. She reminded me that I would be fine. We have had a few talks today about being a fighter and not letting anything get in the way of getting better. I try so hard to do this everyday. I was worried about my life during this last attack. I honestly felt so bad health wise that I had some concerns about life and death! It is a funny thing, pain. Pain can literally make you feel like you are dying even when you aren't. I know that was a short moment where I thought about it and that I will get better, even from this:-) Let's just say that the surgery can't come fast enough. God has a way of speaking to you and telling you when it's time to do things. After everything that happened this week, He let me know it was time to do the surgery.

Meeting A Fellow Cranky Panky Sister!

A true gift from God
Meeting Betsy and her "Mum" as Betsy calls her:-)
On Sunday my mom and I woke up early to do something I had been planning for a long time! I am in a Facebook support group for those who share my rare condition. I had been communicating for quite some time with a woman named Betsy who was going to fly to Tucson from her home in Massachusetts to meet with the transplant team and discuss her options as well. We bonded over going to the Mayo Clinic on Facebook because I had already gone to Mayo and she was heading there. I told her about my experiences at the Mayo with the pancreas specialists and she decided that after hearing all that she was going to pass on going to Mayo. It is expensive for everyone to travel to other states in the search of better medical care and sometimes when you trust another persons advice it can save you time and money. I wish I had listened when others told me that the Mayo didn't help that much when they went. It is sort of hard to tell people what to do in the group or give advice as everyone has to put so much faith in what they are doing and where they are going. To hear that someone hated the doctor or the experience when you had a ton of hope in that for you is hard. Not sure if I am wording that correctly or if that makes sense. Anyways, Betsy and I both decided, around the same time, to take a huge leap of faith and try Dr. Rilo and his team. She is there now doing her 4 day workup and I just talked to her and she feels very confident too. I go there Dec. 18 and will be there until the 22 hoping for a final approval after that (although I am very confident I will be approved as Dr. Rilo has already said he thinks I need this to save my life). One of my best friends went to college at the UofA and she recommended we eat at Beyond Bread and we sat there for 3 hours! Betsy and her mom have a relationship very similar to my mom and I so our moms could chat and support one another too. It was really a great experience for all four of us! I cried when we first met, I think I had just been so excited about it for so long. My mom drove home from Tucson and I was just so happy the whole ride home!

Diabetes

Thursday, December 1, 2011

Blood sugar testing
Glucose monitor 
Here is the test they did one me in pictures:-) The left is the monitor that I mailed back to the doctors and they plug it into a computer to check out what my blood sugar has been over the past week. The right is just a kit that I will use for the rest of my life after surgery. I will check sugars a ton at first and then 4 times a day for probably life. I am okay with that though! Give me no pain and a long life and I will do anything! I think its important to add the pictures for those of you who may be about to have the surgery or thinking about it. It will show you what you can expect through the process or maybe even things to ask your doctor about. I will try and post pictures as I have procedures. Unless of course I look awful...then maybe now:-) We will see!

A letter to my first doctor

Tenley, one of my dearest friends from college, suggested that I included emails and letters from doctors just in case I decided that I would like to turn this blog into my own little book one day:-) I thought it was a great idea so I have included something I have wanted to do for a LONG time! This may sound crazy, but the first doctor I had the first time I ever had pancreatitis blamed me. He said it was because I drank alcohol the night before! Crazy, as all of you would have this disease if that was the case...and some more than others ha ha, Theta what??! Anyways, I decided after getting my genetic tests back that I would write him a letter. I am not sure if he will read it, or continue reading it, as it is rather harsh. I honestly feel a little bit guilty for being so rude to him in the letter, but if you had been in my shoes in that hospital the first time I will promise that you would understand why I feel this way. Anyways, I wrote him a letter telling him to remove some things from my medical records. I sound like a little lawyer in this, which is funny because that was always something I thought I would do. Maybe one day...for now I will get better. Enjoy my little piece of revenge. 




Dr. Warm,
I was a patient of yours at Sharp Coronado Hospital. I was two weeks into my twenty second year of life when my stomach hurt beyond belief and I was sure I was dying! After being admitted to your hospital, you were assigned to be my doctor. After discussing that fact that I had lipase over 5,000 and pain that was horrific, you determined that I had acute pancreatitis. I told you that the night before I had drank 3 cranberry and vodka drinks. You said this caused my pancreatitis. I specifically remember telling you that, “I only had three drinks” and your response was “That is excessive”. I quote you verbatim as I will never forget those words. My mom was in the room when you said that and she was blown away. We asked for you to be removed as my doctor and in turn you put yet another doctor from your same staff on my case. You refused to listen to the GI specialist that was called in to help on my case (he even told us you two had a difference of opinion).
Since seeing you I have had many more attacks of pancreatitis (somewhere around 30) and my doctors have never accused me of being an alcoholic. I do not drink any alcohol because it is not good for my condition. My parents got me out of Sharp and I was immediately admitted to Scripps in La Jolla where I received better treatment and the doctors there knew better than to blame three cocktails on a serious medical condition in a 22 year old female with no history of drugs or alcohol. Unfortunately, my time in your care was documented in my medical records. In these records it states that I am a colllege student with episodic binge drinking and it also says that the cause of my conditions is: ALCOHOL! I am asking you to remove any part of the record that blames or mentions alcohol consumption. I want to be a functioning adult who is able to get life insurance and my own health insurance one day and I do not want your mistakes and lack of expertise to compromise this.
In the future I would hope that you would stay inside your realm of expertise. I am not trying to be hurtful, I am trying to save patients from ever feeling as awful as I did about the treatment they received. You are not a GI doctor. You are not a pancreatic specialist. It should have sent off a red flag in your head that you had a patient, whom was only 22 years old, with this severe case of pancreatitis. That is not normal under any doctors judgement. Had you listened to the specialist on the case and had you put aside your ego you would have understood this and you would have much better served me, your patient, which is hopefully why you went to medical school. 
I have faxed my genetic testing to show you that I carry all three of the genes associated with chronic pancreatitis. The most prominent gene is the PRSS1 gene, which is what causes me to suffer from hereditary pancreatitis. This means, Dr. Warm, that nothing I ate or drank caused me to have pancreatitis that day in your hospital. It means that I was born this way and I cannot help that this happened. I also sent you an article titled “Pathophysiology of Chronic Pancreatitis” that was written by those who are actually specialists and those who research this field. We could call them experts. I would like you to pay specific attention to pages 1318 and 1320. On 1318 it mentions, “Pancreatitis almost NEVER occurs in persons who consume alcohol for less than 5 years.” As you know I was 2 weeks outside of being 21. I had been socially drinking for approximately 2 years. Right away, you should have considered this and it should have raised a red flag. The second page, page 1320, mentions that patients under 25 should have genetic testing. The point of me pointing out these pages is that age should have alarmed you. You should have been concerned that I was only 22 years old and you should have known better than to blame my three drinks the night before!
I am now finished saying the things I only wished I had known the day I was with you at Sharp Coronado Hospital. I am harsh, as you can see, because you hurt me badly that day. You offended me and you made me think I caused myself such a terrible and life wrecking disease. This disease has taken away three years of my life and I have suffered greatly. I am now in the care of wonderful GI doctors and expert surgeons who are offering me hope for the future. I am now a self educated expert on the pancreas. I have researched every scientific journal article and have spoken to the best doctors who specialize in the pancreas that this country has to offer. I only wish that you had taken the time to listen to experts when I was your patient. My final request, please remove any mention alcohol from my medical records or I will seek legal action.
Thank You,
Whitney Yates
(623)670-3818

Dr. Rilo

Tuesday, November 29, 2011

I guess I will leave this shirt at home
when I go to the UMC in Tucson:-)
I am not sure if I have mentioned or posted about Dr. Rilo yet so I needed to update the blog! Dr. Rilo is my new doctor at the UMC Medical Center in Tucson. It is the medical teaching hospital associated with the University of Arizona, my rivals as an ASU alum:-) That is okay though, as Dr. Rilo will most likely be saving my life here in a few months and I may even wear a UofA shirt once this happens! Upon researching, I found out that the UMC had one of the best facilities for treating chronic pancreatitis. Dr. Rilo worked at the University of Cincinnati for many years before coming to Arizona. In Cincinnati, he was able to take out the pancreas, isolate the cells inside that pancreas that produce insulin, take those cells and inject them into your liver, and make you possibly not a diabetic! Wow, and yes this was a Grey's Anatomy episode, really it was;-) This is a 14 hour procedure with a grueling recovery but many who have had this done say they never regretted it even with their surgical pain. I had a 3 hour consult with Dr. Rilo last week prior to my new news. He then put a continuous glucose monitor on my side. It was a catheter that takes my blood sugar every 5 minutes. He also made me prink my finger 4 times a day to check blood sugar before eating. I then sent him the monitor and the results so he could get an idea of what type of islet yield he would be able to get from my pancreas. This is also to make sure I have not developed the start of diabetes. I can't wait to see what those results are as well. Again, praying for a high function and a great yield.

Anyways, as far as Dr. Kahn and Dr. Rilo, both from the UMC, they were wonderful! I met them both and they stayed and answered all of our questions. Dr. Rilo knew my medical records like they were his own! He had done his homework. My medical records are the size of many many leather bound books (ha, humor is good)! He knew everything about them. He felt something was not adding up. He asked me how much I had to drink the night before the first attack. I told him 3 drinks. This was the honest to God truth. He said there was no way three drinks caused this. He said there was some part of the puzzle missing here and he was right. At that time we did not know it was hereditary. Now we do, and once I called him he said it made so much more sense. I emailed Dr. Rilo and within 10 minutes he called me. I missed his call so he left his personal cell phone number on my voicemail. I talked to him on speaker with Dr. Kahn too. He assured me the surgery can still be done on me even with this finding. He also assured me that the risk of the cells developing into cancer in my liver would be much smaller than them developing into cancer in my pancreas. I was relieved a little.

I go back to the UofA on Dec. 21st. I will be there for three days having an extensive amount of testing done. I pray it goes well so that I will be allowed to have the surgery. As long as everything else is healthy and all the options have been eliminated, I will get approved. I must have this surgery now. Before, I was on the fence as they say. I thought I would do it, but maybe later. Now, I know I have to do it and I have to do it as soon as possible. I need this organ out of me before anything else happens with it (and you know what I mean without saying it, yikes!). So again, friends and family, I need prayers. I know there are so many worse things that can happen. I feel like this is the worst sometimes, but I remember those who are not here anymore to fight their battle and I am reminded to keep fighting!

If you or anyone you know are suffering from pancreatic cancer, chronic pancreatitis, or any other pancreatic issue please please please call the UMC, Tucson. Ask for Dr. Rilo or his receptionist Renee. I am telling you he could be the man that saves your life too! He is a brilliant man with a lifetime of dedication to this organ and he knows it better than any doctor in the three states I have gone to for help! He was truly brought into my life by God and I know he can try to help you too.

http://www.pancreatitiscenter.com/

Hereditary Pancreatitis

It has been a while since I last posted. That is because I have been rather sick:-( A trip to the ER with some less than helpful Doc's who said "I am finding nothing wrong here" and a few tears later, I am now somewhat better. BLAH. Anyways, today I had the worst day of my whole life. I can honestly say that, but it's better now, and for some reason I feel like writing about it right now before the clock turns midnight and the day is over. I think it is so that one day when I am loving my beautiful life with my husband and  beautiful babies that I know God will give me, I will be able to look back on this post and think about how far I have come. My best friend Katie told me tonight, "Whit don't worry, today is the worst day of your life and it is only going to get better from here." She is so right, did I mention I don't know where I would be without her? It's funny that in your darkest hour you revert back to those friendships that mean the most to you and make you feel the best. Anyways, months ago I have genetic testing at the Mayo Clinic and the results took forever. During my meeting with the genetic counselor we went through my family history. She said there are three possible genes that could be causing my issue. Most docs said they were sure it was NOT any of these and that the test wouldn't change things. So I didn't worry about it until I reached the Mayo. They explained the increased risk of pancreatic cancer associated and the importance of knowing. So I was told that CF, SPINK1, and the hereditary pancreatitis genes could cause this. The worst one was the hereditary gene, as it caused pancreatic cancer in 50% of patients. It is always passed down to babies and my mom or my dad has this gene and it has not manifested itself in any way known yet. The next, SPINK1, could be passed down and could cause pancreatitis in my unborn children. The last, CF, was the cystic fibrosis gene and it could cause pancreatitis in patients with it, but not all those affected with it get pancreatitis. It would only affect my unborn children if my partner had the CF gene as well. If both of us did, we would run the risk of having a child with cystic fibrosis as well as possible pancreatitis. Patients usually get afflicted with one of these genes with family history. Again, I never really worried.


With that being said, I was not worried about the CF gene and I figured I had it because I am a light skinned, blonde person with European roots. This is what the typical type for this gene is. I figured I would cross that bridge later and that all would be well. The second, SPINK1, I didn't think I had because I figured my relatives would have had this. And the last, hereditary, I really knew I didn't want with its risk of PC. My mom thought there were two family members (that would be great relatives to me) that may have had similar symptoms as I do. My grandma on my moms side had a brother who died at age 35 after having his gallbladder out. He still had the same severe back pain that he had while it was in, the reason they took it out, and eventually died from this issue, which was never discovered. My grandmas sister had back pain for years. They decided to take out her gallbladder when she was 54. She never made it out of the hospital, as my grandma said she had an infection.


Dun dun dun...suspense in this story at all? I got a call with my results today and here it goes...the sweet lady on the phone started off the conversation with "you have hereditary pancreatitis". My heart sank and my tears began without any control. She was so sweet and spoke with me for a while. As the conversation progressed she told me I also had SPINK1. After that she told me I also had CF mutation. WOWZA. Yep, I have all three of the only known genes to cause pancreatitis. FINALLY, I had PROOF and and answer to my questions. I truly feel like I just solved a crime mystery!!! I could not even talk to her so my mom (I was thankfully at my moms) jumped on the phone and took it from there. We made an appointment to go see her tomorrow at 3:00.


My emotions today have been all over the place. Part of me was happy to know I am not crazy and to have this proof. I told the geneticist that I was so sorry to keep crying and that I felt like for the longest time ER docs thought I was an alcoholic. She told me, "Sweetie, they will believe you now." That made me feel relief. After that part came the intense worry and panic mode. I am scared to death tonight for my mom or dad. We don't know who had the gene for hereditary as it has never presented itself in either of my parents. I want to talk to my GI doctor and see what he thinks about my parents situation. I don't care who has it and I am not upset in the slightest bit with either of them. My parents are the most wonderful parents to me and I would not change my life for a minute, even with HCP (hard getting used to, hereditary chronic pancreatitis). I just worry for their pancreas, I hope both are healthy and perfectly fine. I hope this is just something they carry but will never have to deal with. I hope and pray to God my brother Tyler is okay and not a carrier. He is worried too, but I honestly feel in my heart he is not a carrier. I just don't think he is, don't ask me why. He is so sweet too! He told me I was the strongest girl he knows and that I would get through this. He is a fighter too. He fought off ALL leukemia when he was just 6 years old. We are hoping lightning doesn't strike him again and that he gets a free pass on this one! Please Lord, hear my prayers tonight.


As far as my heart, its wounded big time:-( I have wanted to be a mom since I was 5! I want babies who share my skin, my eyes, my hair, my features. My mom and I are so so so close. If you know us you know we look alike, share mannerisms, thoughts, and expressions. We are very similar. I was always picturing my children to share this with me too. The genetic counselor told me not to stress yet. She said that she had ways to help me have a baby and that I would just need to be very deliberate and plan my pregnancy. She said she would test my partner and rule out what could be ruled out. I am not sure what the IVF process will be, but she said it can be done. Mentally, I would do IVF to have a baby in a second if it meant I could have one of my own. Adoption will be my alternative if I can't, but I think I will be able to. If my mom or dad had known they carried this gene and opted not to have kids that would have been horrible. I would not want either of them to have missed out on the life we have with our family for any reason. My mom and dad are amazing parents and I would not go back and change anything if I could. I would have wanted to be born and to have shared my life with my loved ones. With that in mind, I may still have my own babies and pray for the best. Just because I have all of this does not mean my babies will. Time will tell.


I got my doctor on the phone today and he put me on speaker phone with his colleagues (new post coming soon will be on my new amazing doctor that you all will LOVE as much as I do, haven't had any time to post about this yet). They were happy for my diagnosis, as it solidifies the reason to have the TP-AIT even more. He said it will give him all the proof he will need and that he still wants to study me completely before total approval of the TP. He also said in all his years he has NEVER had a patient with all three of the different genes. He was going to try and find information on any other patient that has ever had all three in the studies they have done. He was also going to ask a doctor who studies families with hereditary pancreatitis about me. He said this man is working on finding a treatment for those who have the gene, but do not have any problems yet. This might be a good option for family members and since he is doing all kinds of studies that usually means free! I am hoping I can get my family genetic testing for free. It is $2,000.00 normally and not covered by insurance so I hope I am on to something here! I am hoping my pancreas can hang in there for a few more months until surgery and I am praying that my damage isn't too far along. I am praying for a high islet yield. I am praying nothing has turned cancerous. I mentioned this at my last GI appointment and my doctor laughed. He said not to worry and that they were watching me closely. In general, if you are reading this, please pray for me and my family. I really need prayers as this is going to be an interesting 2012!

What is pancreatitis?

Saturday, November 12, 2011

A doctor made this video that explains what CP really is...I am hoping that some of his viewpoints are a bit off. I am hoping he is wrong about the "phantom pain" people get once the pancreas is gone. I do think he does an excellent job explaining the pain and also the common misunderstanding that ALCOHOLICS get this! PHEW!

http://www.youtube.com/watch?v=iA7cwCexs6w&feature=share

HOLY COW!

Monday, October 31, 2011

Baby Cow!
Toddler Cow!
Even though this is my "pancreas blog" I don't want to be like the news. The news stinks! They tell you all the bad things happening in the world and scare you right before bed. This is why when I am home alone I stick to Kim Kardashian and Chelsea Lately. I can't handle the truth:-) So anyways, I wanted to share my awesome night! Tonight was Halloween and I had a blast with my best friend, her hubby and my favorite two babies. They dressed as lil cows! So much fun!

TP-AIT Surgery

Amongst the many other stupid things people have said to me along the way, one has been “why don’t you just get your pancreas out”. Unfortunately, the pancreas is a vital organ and it is not like taking out an appendix. The pancreas creates insulin and digestive enzymes. Both are important for survival. Removing it involves becoming a diabetic, going through a 10-14 hour surgery, staples up my entire stomach area, a 30 day hospital stay, and the 40% risk of complications and need for more surgeries.  However, the total pancreatectomy has been done with auto-islet cell transplants. The success rate has been good, but the long term research is not there. The surgery was first performed in the world in 1970 at the University of Minnesota but Dr. Sutherland. It worked and the lady lived another 6 years (I am not sure of her history or condition at the time of surgery). The idea is the pancreas is removed and the islet cells (insulin producing) are then take out of the pancreas and placed in your liver where they make a new home. If it was as easy as I am making it sound I would have had this done already. However, I am now praying that I get approved for this surgery at both the UofA medical center and the UofMN medical center. I would like to have options.
November 18th is my first appointment with the UMC in Tucson! I am so excited. I am also working on getting my first appointment with U of MN medical center. I can’t wait to hear what Tucson has to say. So far, an hour on the phone with someone who understands the severe pain was all I needed to be excited! I will be tested for three days at UMC where I will have a battery of different tests to check every possible thing! I can’t wait to get a second opinion and a better look at what is going on with the cranky panky! The talk of surgery and the research I am putting into this has been the scariest thing I have ever done in my life. Ever. I mean ever ever. I can not even express in words how scared I am for the future and for the surgery. Even with that being said, I pray every day that I get approved for the surgery and it truly becomes my option. After making around 30 trips to the hospital and ER in the past few years, I feel this is my time to do it! I am ready! I want to reclaim the life I love and make it a good one! HOPEFUL tonight!

UMC- University of Arizona

UMC- University Medical Center, University of Arizona

JACKPOT! I hit the motherload of hope today! I was told by my family and support group that the UMC has an extensive chronic pancreatitis center and also has some world renowned surgeons doing TP-AIT. They were trained in Minnesota by THE DR. SUTHERLAND and I am excited. I called the number on the website and wa laaaa! I spoke to the most wonderful lady named Renee for about an HOUR! Yes, she took an hour to speak to me. She wanted to know my medical history from day one of pancreatitis. I told her about Mayo and the doctors “no hope” attitude and the “afraid of pain meds” mentality. She said it made her so mad to hear but she said she understood why there is a huge lack of knowledge. She told me 80,000 people in the US have chronic pancreatitis. There are around 313,000,000 living in the US. She actually helped me have more tolerance for the Mayo even though I was fuming! She told me that she felt sorry for me because I was 25 and probably even more misunderstood than some of the older patients. After giving her my entire medical history she said that based on what I have told her she thinks I will be asked to come in for a 3 day work up. Before this, I will be given a new GI doctor that works out of Phoenix. I can have him be my doctor even if I don’t end up doing the TP-AIT. WOO! She told me he will never miscalculate or judge my symptoms and that he has devoted his career to my disease! What a relief. I am just excited to get a new doctor who understands. She also told me that my pain is mismanaged. She explained that mismanaged pain can cause stress on your body and can physically exhaust a person. It is really bad for your health. She told me narcotics are addictive, but that patient comfort far surpasses fear of addiction. Hopefully, if I can get the panaceas out I won’t need to worry about long term narcotic use! This woman understood the agony of my back and stomach. She is referring me to a pain clinic to get my pain under control and my first appointment with UMC is Nov. 18th. What a blessing. 

Doctors who Understand?? Where art thou??

The Quest for Someone who Understands!
This statement above is my mantra when looking for GI doctors. I didn’t listen to people in my support group when speaking about doctors because I thought Mayo had such a good reputation and had to be able to help me. I was right, they do have a good rep, and for good reason. However, they are not on the leader board for pancreatic diseases at all. Unfortunately, they are not even in the top 5. I did not know this until I had already been seen in Minnesota at the Mayo and had started being seen here in Arizona. 
My last appointment with my doctor at Mayo proved to be a really upsetting one! I went in after being in the ER last week for severe CP pain. My lipase didn’t rise because it has started to stay stable even during attacks. All of the literature about CP supports this because it is said that after many attacks the lipase doesn’t need to rise to be having an attack. I also had another MRCP which didn’t show any changes to the pancreas. My GI doctor called me into his office and said, “I don’t mean to sound insensitive, but there is nothing else I can do”. My mom sat right there as he said it. I asked him about the pancreas transplant or the TP-AIT (Where they take out your pancreas and give you a transplant of your own insulin producing cells to put in your liver). He said, “to be honest, I am not familiar with this.” Hmmm. Okay. Time to move on. 
Later that day I called and asked if I could switch doctors and also stated that I was out of Percocet. He said he was afraid to give me pain meds and that I should go to the ER if I was in pain! If that were the case, well then the ER would see me every day!  They told me that the Mayo has a policy about the switch. You can only switch doctors if your current doctor agrees to be removed from your case! WHAT! So...you can only be fired if you agree to being fired. And guess what??? He did NOT agree to me going to someone else. EGO TRIP! If you are in the process of becoming a doc (Vinnie) promise me you will be a good one:-) 

November: Pancreas Awareness Month

Saturday, October 29, 2011

I am getting ready for pancreas awareness month! I ordered my hat at www.pancan.org and you can too:-)

Perspective

Sunday, October 23, 2011


My illness has changed the way I think, but it has not changed me. Perspective, I believe, is created based on life experiences. Some go through the loss of a newborn baby, infertility,  the loss of a spouse, falling in love, marriage, and for some maybe it is betrayal or divorce. Whatever it may be, it changes your perspective. It makes you less selfish, more selfish, happier, sadder, excited, more understanding. For me CP has made me less judgmental. I like to think of how I would feel in someone else’s shoes. I try to leave the judging to the man upstairs, because you don’t know what it is like to be someone else. Someone else may have an abortion, may cheat, marry the wrong man, want a baby, hate a person, be a drug addict...whatever it may be I am not them and I don’t know how it feels. I think this has come from feeling judged. I feel like the “alcohol abuse” stigma that is associated with CP is so hurtful, even when I google CP and it is the first thing I see. Such a bummer, one I want to change, and will work all my life to change. Oh yea, you heard me, all my life. 

Support Group


I didn’t know my mom was sitting up at night worrying about this too. One night, in the middle of the night she was online researching and she found a support group. It was a Yahoo group and she wrote a lady who had her pancreas out. The lady gave my mom her phone number and told her to have me call her. After holding on to the number for a few months and thinking it would be weird to call I finally called. I had no idea you could live without a pancreas! 95% of people do not know this, and those people include doctors! She was a teacher too and had her pancreas out by Dr. Sutherland and the University of Minnesota. This was the first time I had heard of Dr. Sutherland, but would not be the last. She was doing great and had islet cells transplanted into her liver to lower her risk of becoming a brittle diabetic. It was working and two years out she was loving life. 
I’m not sure why I didn’t think to look on Facebook for a group but one night I did.  It was like hitting the jackpot! I found a wonderful group of people all suffering from the same thing. Many had TP-AIT, total pancreatectomy with Auto-Islet Cell Transplant. They were alive and living life pain free without a pancreas. Many were diabetic, but diabetes is at least manageable. Facebook has saved my sanity, I bet Mark Zuckerberg never thought it would do that! Facebook has brought me to many people who know my pain, have experienced my frustrations, and understand what it is like to have a disease that is misunderstood by even those in the medical field. In my group no one is from Arizona. I remember feeling like I was all alone. I rarely hear of anyone knowing someone who had CP. Facebook has changed that for me. My friends from my group exchange phone numbers, offer condos/houses to stay at while getting treatment, offer help at the hospital, and offer so much support. Most of all, my group has offered me HOPE

CP Management


Tricky word, I have come to realize through my struggle. Doctors have given me Percocet, Oxycodone, Morphine and Dilauded. Unfortunately, over the counter pain medicines do not even put a dent in this type of pain. I wish they did! Doctors will tell you funny things about pain medicine. They are addictive, no doubt about that, and they are used incorrectly by many people. There is a difference between being dependent on them and being addicted. However, my regular everyday doctor told me not long ago that taking Percocet even three times a year is too much. He also told me I would die without a pancreas, so I am choosing to ignore him:-) What is the alternative? Deal with pain everyday? My specialists understand this pain and they know it requires strong pain killers. The most knowledgable doctors will tell you that pain must be managed. That is the problem with CP. I should add that to my list of “I knew”. I knew that people with CP often get addicted to pain medications. It is because there is no cure and the only treatment plan is to take pain medicine! 

Pain

This girl is tired of the BUM!

What does chronic pancreatitis feel like?
Pancreatitis pain for me can best be described as someone holding on as tight as they can to the pancreas with their fist and not letting go. The pain radiates to the back and feels the same there. I watched a news segment on a little boy who had TP-AIT. He told the newscaster it felt like wrestler guys punching him in the stomach. Very cute way to put it! Yes, it does and also like you are bruised in the ribs. Laying flat is not possible because that makes the bruising feel worse. Curling up in a ball doesn’t help, heating packs offer little relief, hot baths help in the moment...Eventually when all else has failed me I go to the ER. My GI doctor once told me that CP feels a lot like pancreatic cancer. It presents itself with the same symptoms because the pancreas is slowly dying.

Genetics and CP


While I was at the Mayo Clinic in Arizona, where I am now seen, I had a chance to meet with a geneticist, Katherine Hunt. She was the cutest little lady with the sweetest voice and heartfelt manner. I loved her! She helped me understand more about genes. She drew out my entire family and went through the history of each family member. Today, there are three known and identified genes that can cause CP. Katherine believes there are over 30 unidentified mutations that can cause CP. Today we have three. They are CFTR mutation, SPINK-1 mutation, and Heredity (PRSS1). I am waiting on the results of the three now. During a visit with my GI doctor at Mayo, he mentioned the genetic mutations that can cause CP. He said there were two of them and he was trying to recall the names. I blurted out these three and he said “Oh yea, you are right, there are three” and then he looked my parents and said “You have a very intelligent daughter”. Thanks Dr. Decker, I’ll take it:-) The CFTR mutation is the cystic fibrosis gene. If I have that gene it just means I am a carrier for cystic fibrosis. Many people are and never find out. It will only affect you if you marry someone else who is also a carrier. In that case one of your children could have cystic fibrosis. Knowing if you have a genetic mutation won’t help you in the treatment of CP. For a while I thought it was only going to affect my insurance (wrong, GINA law prohibits this). Now I know that it will help me in making my decisions about the future. Having a genetic mutation can make my risk of pancreatic cancer increase even more and can change the way I will have my future babies. No worries, I have googled SPINK-1 AND pregnancy along with CFTR AND pregnancy enough to know it is still perfectly possible! 

What Next?


After my last attack I was donezo. Even though that is not my choice, I was done. I decided to get in touch with The University of Minnesota. They are the best, pioneers of the pancreas, some of the experts this disease has to offer! They are my HOPE. The team at the U of MN is dedicated to helping people who have CP, pancreatic diseases, and pancreatic cancer, those who are suffering. They help people who are hopeless and sick. This is their specialty and they are the best in the nation. Dr. Sutherland, who pioneered the TP-AIT surgery, is at U of MN. Although he is retired from surgery now, he is still there researching and training. His doctors and team are doing TP-AIT’s more than anywhere in the nation. They are doing case studies, offering FDA approved new drugs, and most of all giving patients back a high quality of life. I do not know what they will say about me or if I will be a candidate for the surgery. To be honest, I don’t care. I am just so hopeful and excited to go there and meet these doctors. I am so excited for a second opinion and a closer look at what is happening to my pancreas. I want to know her progress and her appearance. I want to know what these doctors who see this daily think. What a blessing, what a thing to thank God for! I was given their contact information from my support group members. Within minutes of emailing these doctors I got a response. Not just a response from one, but from all of them! They can’t wait to meet me and want to see me. What a blessing! I have HOPE! I promised myself that no matter the outcome of my trip I will come home okay. Whatever they say will not break me or ruin my hope. I will be okay, because the soup will be different the next day. Day by day. Thank God. God is good. 

Thanking God, the Man Upstairs


I am a Catholic. Even though I am not a very good Catholic these days, I am a Catholic and I love being a Catholic. I am a Christian who believes that Jesus Christ died for my sins. I believe that Mary is the mother of Jesus and she is the mother who will help me. Mothers always give their children what they want (much love to my little Italian grandmother and my mom whom always shared this with me). Mary always listens to my silly wants and my important wants. I ask her to pray with me and speak to God every time I face a challenge with CP. I have learned to thank God more often for the good things in life. I hear people talk about “spiritual journeys” and I know mine is just beginning. I am not all the way where I want to be with this, and I am strengthening my faith every day. 
Today I thanked God for:
  • Blessing me with an amazing Mom, Dad, and Brother
  • Allowing me to get through my undergraduate degree without having CP
  • Helping me meet the most caring and compassionate real friends 
  • Allowing me to be in a finically stable family who can help me with medical bills and treatments
  • Allowing me to have fun in life
  • Giving me an outstanding weekend of health and bliss to stand beside a college friend at her wedding
  • Giving me good pain medications to keep me moving through life




My List of "I Knew's"


I already knew many things about CP. It seems I almost obsessed on the topic because it was often on my mind. When something is hurting, it is usually not far from your mind. I knew about the implications the CP diagnosis the moment the soft spoken doctor who handed me tissues as I cried delivered the news.
What I Knew:
I knew chronic pancreatitis was caused by scaring of the pancreas.
I knew chronic pancreatitis caused an often chronic pain in the upper abdomen and back.
I knew chronic pancreatitis requires its suffers to take daily enzymes with meals.
I knew chronic pancreatitis can cause diabetes over time.
I knew chronic pancreatitis does not heal.
I knew chronic pancreatitis has no cure.
I knew chronic pancreatitis gets worse over time.
I knew chronic pancreatitis increases its sufferers risk for pancreatic cancer. 

WOWZA! How do you keep being a fighter with those grim little facts above? You do, and I did:-) I learned to thank God for the good stuff! 

Knowledge is Power

I have always loved school
and research, thank God!
I am not afraid of reading a complicated medical journal with language that is foreign or hard to understand. I will figure it out and I won’t stop until I fully understand what it says. I can’t tell you how many times I have typed “chronic pancreatitis AND pregnancy” into Google. Nope, I am not pregnant or getting pregnant any time soon!  I am not married and am no where near married:-) I know I want babies one day though.  As crazy as it may sound, I LIKE knowing what is going on and I want to be prepared for things that will happen in the future. I want all of the facts, all of the research, and all of the stories I can possibly find. Knowledge is power, I know that now more than ever!

Being a Fighter

For all of us with cranky pankys!

I have had to miss a TON of life during this difficult (almost) three years. However, I pride myself in being a fighter. I don’t think I even knew that I was a “fighter” until a “pancreas friend” from my support group (yep, I love my fellow CP sufferers:-) pointed it out. She told me I was a fighter and so was she. I thought about what that meant a lot after that and this is what I came up with. Either I have way to much time on my hands (doubtful, I am a busy girl) or I am just a heavy thinker. 
Being a Fighter:
Being a fighter means that the first time I had pancreatitis I stayed positive and hopeful that it was a one time thing. I refused to let it change the direction of my life and carried on with my plans for the future. I was going to stay in San Diego and become a teacher. Being a fighter means that I could pull off student teaching, and get an A  (I am bragging!), all while suffering from a CP attack. After being in the hospital for five days, I returned to my first graders the next day and was so happy that I could. Being a fighter means begging the nurses and doctors to get me OUT of the hospital in time to go to my very first interview for a second grade teaching position. They all wished me luck as they took my IV's out and rushed my paperwork along. The nurses even bought me a good luck ladybug from the gift shop. I made it out one hour before, with just enough time to throw on my pretty dress, while my mom sat in her car in the parking lot because I could not drive! Being a fighter means I interviewed intelligently and got the job, even on Dilaudid. Being a fighter means I allowed myself a week long pity party after returning home from a devastating trip to the Mayo Clinic in Minnesota. Not long after I was my happy and smiling self. Being a fighter means refusing to except “I am sorry, there is nothing we can do for you” as an answer and seeking out the best doctors and medical treatment in the country. Most of all, being a fighter means that I make it through each hospitalization and ER visit and look forward to the next “soup of the day”. And for that I am very proud! 

My Story, How it all Began



Almost 3 years ago! I can tell I have
lost a ton of weight since then by this
photo!

Christen in San Diego-My Dad would
always snap photos and make
me upset! I am glad now.


















There is a part of me that you can’t see. The part that is deep inside me, behind my rib cage and stomach, the part that has been wreaking havoc on my life since February 15th, 2009, the part that causes me to have chronic pancreatitis. Many people have no idea what this is and I will admit I didn’t know either! The doctor told me that my pancreas and spleen were inflamed and that I would need to stay with them for a few days, which turned into weeks. I had never even been to the emergency room, not once in my life. My first attack brought me much anguish. When I went in I told them that the night before I had three cocktails, an admission I would come to regret. I was pegged as an “college student who participates in episodic binge drinking”-straight from my medical records, any lawyers want to help me get this out? I was a college GRADUATE who went back to school for a second time, thank you! Have no fear, I was told that if you don’t drink, eat a low fat diet, and take it easy you won’t have any problems again. Phew! 

Pancreatitis pain began again in October. Why was this happening again? What was causing this?  After all my MRCP’s, CT scans, and blood draws it was confirmed that the pancreas was inflamed. I started to become all too familiar with amylase and lipase levels, which are markers of pancreatitis in lab work. My lipase was the highest it had ever been, I believe in the 5,000 range when normal is somewhere near 150. Again, after a long hospital stay things returned to normal and I was back home. This time I was depressed and upset and I didn’t want to stay in San Diego anymore. I wanted to be near my parents, it was just easier. I moved home the following month and have yet to regret it. 
 After many more attacks and hospital stays I was given an EUS (endoscopic ultra sound) and an ERCP (endoscopic retrograde cholangio-pancreatography) where they went in and cut one of the ducts, called a sphincterotomy. The doctor who preformed this told me as I was coming out of surgery that he believed he had eliminated my cause of pancreatitis. A month later I had my gallbladder out and that surgeon told me that it was scarred and damaged. We all believed it was contributing to my pancreatitis too. Life was good. 

It was only a short time before my crazy pancreas was back at it again! I devoted so much of my time to figuring out where to go next. I used my prep periods at school to call hospitals and doctors, obtain medical records, and make plans. I didn’t realize how many times I had been in the hospital since I moved back to Arizona until I went to get my records. The woman at the records department asked me which records I wanted as I was admitted nine times! I sat in my car and cried after that. 

I found that the Mayo Clinic in Minnesota had a pancreas center and I wanted to go. After reviewing all of my records the Mayo decided they would see me. With that, my mom and I headed there. I was so eager, so excited, and so HOPEFUL!  After another EUS I learned my pancreas was no longer normal and my worst fears were coming true. My pancreas showed four of the markers for chronic pancreatitis and was forever scared. I was diagnosed with a chronic and progressive pancreatic disease with no cure and I was devastated. For a week I let that get me down, and then I got over it and began living life again. 

I began to seek out alternative treatments. I took antioxidants, had acupuncture, got massages, and ultimately stopped working as a second grade teacher. I went gluten free and dairy free (dairy had to be added back because I love cows). Each time I would get sick while doing all these things I would be so confused...I was doing everything right. I have finally come to terms with the fact that this is out of my control. I spoke with a friend the other day who lost a baby 13 days after birth. She told me that one thing she learned during all of that was that this life is not in our control. We cannot create the future or plan for anything. We can only do our best, but God will do the rest according to His plan. She was right and I am okay with that.
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